My Diagnosis

When I was three years old my right eye began to turn in. I also had signs of clonus, which is defined as involuntary and rhythmic muscle contractions caused by permanent lesion in descending motor neurons. Basically, my brain wasn’t telling my reflexes when to stop. These 2 symptoms concerned my primary physician, so he sent my parents to have an MRI done on me in Lubbock, TX. When the MRI results came in, the doctor informed my parents that I had White Matter Disorder. According to childrensnational.org, white brain matter is the brain tissue that carries information between the nerve cells in the brain and spinal cord. When the white matter does not develop fully or as it should the results can be mental retardation and other developmental disabilities. White Matter Disorder in children can mean many different things, but in most cases it may be that there is a lack of myelin, because the myelin was never made in sufficient amounts. The doctor informed my parents after finding my White Brain Matter Disorder, that later on in my life- after puberty, mostly- that it could possibly lead to bigger things such as multiple sclerosis. Well, he nailed that one right on top of the head.

I started showing signs of MS at twelve years old. I noticed that I became increasingly sick, and my immune system was compromised. I had dealt with tremors since I was young, but the tremors continued and I began exhibiting other symptoms. I began noticing that I lacked energy where it seemed that all of my peers had more than enough. I was fatigued constantly. So much so, that during the summer I would beg my mom to let me stay inside and sleep instead of having to go out and play with my friends. I also had a lot of random aches and pains. As you can imagine, I started having to go to the doctor often. If I was not sick, then I was in a lot of pain. My feet would often turn purple and fall asleep for no reason. My pediatrician began doing a variety of tests to see what could be going on. They tested me for everything from Rheumatoid Arthritis to Lupus. Finally, when I was 14, he decided to send me for another MRI and a spinal tap to rule out MS. They did not expect MS, because at the time, most people were not diagnosed until mid to late 20’s—but, sure enough the tests came back positive. I do not remember much of my mom telling me the news. However, I do remember a time shortly after. We were at the pool with a few families and my mom was telling my friend’s mom about my diagnosis. I’m not sure why this exact memory stands out so much in my head, but I think maybe it’s because that’s when it finally hit me that something was really wrong. I remember sitting in my neurologist’s office and going through all of the MS magazines before he came in to talk with us at my appointment. Reading about MS at such a young and vulnerable age was scary, to say the least. I was haunted by pictures of men and women in wheelchairs and stories about how difficult their lives were. My parents, after finding out, were just as shocked and in denial as I was, I’m sure. They found me an MS Specialist in Oklahoma City for a second opinion. My doctor in Oklahoma City, is still my specialist to this day-and I feel like I owe so much to that man! Dr. Gabriel Pardo was one of the first people to help me truly understand what was going on with my body. He was extremely positive and patient while explaining to me in detail what exactly I was facing. He helped me see that even though I was facing, what at the time, seemed like the end of my life as I knew it-that I could still live the life I had dreamed of. He helped me see that I wasn’t alone, and that he and all of his staff were doing everything in their power to help patients like me, and to help find a cure. He’s assured me many times that he is confident they will find the cure to MS in my lifetime. I still believe and have high hopes that they will!

After the shock and denial wore off (for the most part), I began living my life again. At this point, I knew I was different health wise. I began having to take Copaxone injections as well as other medication, and I had to learn how to listen to my body. I knew one thing-I was determined to not let having MS change my life. I still had big goals, and I certainly wasn’t going to let that get in the way! You see, when you find out that you have an incurable disease at the cusp of puberty, as much as you don’t want it to change your life, it will. My life WAS different. As we all know, teenagers are emotional in general. When I was diagnosed, the doctor told my mom that the part of my brain where my lesions were could have a huge impact on my ability to control my emotions and it could even affect my ability to make rash decisions. It all makes sense now, but back then I was so convinced that I was just like everyone else (still in denial, obviously) that it wouldn’t affect my life. I say all of this, because my teenage years are a whirlwind of emotions and bad decision making. I had to be put on anti-depressants early on, and as I’ve mentioned in another article, those medications didn’t always help me. Finding the right anti-depressant for you is hard!! While some of them make you feel too high, the others make you feel way too low or can even cause you to become violent. I dealt with a little bit of all of those things until I found the one that perfectly balanced my crazy emotions. I didn’t understand all of this then-I just thought I was a normal teenager, but looking back now I see the impact all of those changes made on my life. Physically, I still felt normal for the most part. Yes, I had unexplained pain and tremors, but other than that I felt like everyone else. I continued to participate in sports and other extracurricular activities. I did learn one thing physically, as much as I wanted to be, I was not good at sports. Ha! My coordination and balance were seriously lacking, but that didn’t take the try out of me!

Fast-forward to high school, and only a handful of my closest friends and family knew that I had MS. I was contacted many times to be a young advocate for the MS community, but I had an extreme fear that others would see me differently if they knew I had a disease. I felt like I hid it fairly well. I was a good student, I had friends, and I tried my best to fit in, so why should I let everyone know? I had this idea in my head, that if my peers found out that they wouldn’t like me anymore. I dealt with some mean girls in Jr. High, and at the time, my emotional self simply couldn’t handle any other judgment or scrutiny. So, I pretended continuously, like I was fine. I never let anyone in on the emotional war I was facing inside or the other issues I had going on. I didn’t feel like it was effecting me then, but now I can see how it wasn’t helping me in any way to hide my MS. Hiding my MS and burying my emotions about how I felt and what I was dealing with led to a lot of trauma. I would lash out at those I loved the most, and make spur of the moment decisions. I became reckless in my decision making. Looking back now, I know that God must have been watching out for me, because some of those decisions could have deeply impacted my life-and not in a good way either. Around 15 was when I started experimenting with alcohol and pills. I felt so lost, that I wanted ANYTHING, to make the darkness inside of me go away. I was raised in an extremely close and loving family, a family of strong faith, so when I began making these bad decisions I knew I was breaking my parent’s hearts. Yet, at the time, as I mentioned, I was in such a low place that I didn’t care. I began dating, and some of those relationships were not the best. I let boys walk all over me, control me, and take advantage of me. I’ve always been known for my sweet and quiet nature, but back then that sweet and caring nature was basically an open door for some people to treat me pretty poorly. I want to make it clear though, I do not at all blame those people-I blame myself. I let the fact that I had MS, and that I was so desperate to hide it allow others to treat me like trash. But again, I was in such a low place, and needed so badly to feel wanted and accepted for who I was, that I let myself sink into a pit doing so. When you’re depressed and hiding things, it only takes time before you realize that everything you’re doing to try and escape the life you have is not helping you one bit. I made a lot of mistakes after my diagnosis, but my biggest pitfall was hiding my identity with MS.

Not my entire story is bad; I ended up having a wonderful time in high school overall. I have a ton of great memories with some of the best people! I ended up going to college and graduating with a bachelor’s degree—but I did have a lot of ups and downs along the way. However, those ups and downs are what have made me into the woman I am today. The woman I am today is proud of the person I have become despite being diagnosed with MS so young-despite all of the issues and things that I went through. I’m telling my diagnosis story, because I want others who are diagnosed at a young age also, to know that it is SO important to be who you are. Tell others about your MS, don’t hide it. Embrace the fact that you have an illness, and keep being the wonderful you that you are! I wish I would have had someone tell me back then not to care, and not to hide how I was feeling. It took me eleven years of my life and a lot of ups and downs to be able to hide my pride and openly tell others I have MS. Those eleven years of my life proved tough, but that’s because I was so determined to not let others know that I was different that I almost let it defeat me. Please don’t make the mistake I did. Do not bury your emotions or the fact that you have MS. TELL OTHERS, and tell them proudly. You are a fighter, and you may have MS, but that doesn’t change the fact that you are still strong, and you are capable. Be open and be honest. If you are feeling down or upset, talk to someone! I cannot express how important it is to be truthful about your emotions. Burying my emotions and my feelings about my diagnosis could have led me down a much darker and more difficult road. I would love to be that person for you, as well. I feel that I was given my story to help others who may be facing the situations I once was. My teenage years were quite the rollercoaster, but I was blessed to have wonderful friends, and the most loving and supportive family surrounding me constantly. I truly believe they are a huge reason that I made it through those years, because at times I didn’t think I would. Surround yourself with loving and supportive people-people with understanding and compassion! Most of all though, don’t stop living your life. Continue to reach for those goals and don’t stop until your wildest dreams are now a reality! Even though I had a rough go round after diagnosis, that is one thing I can say without hesitation-I didn’t let MS stop me from pursuing my dreams and neither should you!

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Comments

I don’t mind sharing my diagnosis, problem is when I’m seeking employment it can be a deterrent to getting a job. some are not knowledgeable about MS and think the worst. My neurologist even advises I not disclose to prospective employers.

Thankyou for your story Calie, it is very inspirational, and at the grand old age of 52 has me reaching for my ipad to write my own notes,just to get something down – even for 20 minutes – will be a therapeutic,healing and satisfying experience! x

Your suggestion to not hide your illness is applicable to those at all ages. I was first diagnosed the year after I graduated from college, and I was so afraid that I would lose my first real job and the friends I had made, that I told no one, including my family for quite a while. When I started to tell people, I was extremely selective. I worked harder than I had to just to prove (to myself) that I wasn’t different. This led to isolation and self-esteem issues that I carry with me 30 years later.

I was in 5th grade, riding my bicycle home from school and my vision went out and was very blurred. I made it home and it got a little better. My next episode wasn’t until my senior year of high school. I was an “A” student in math and couldn’t figure out how to add and subtract. Also my reaction times were very slow. This was so unlike me. Finally almost 10 years after that,my daughter’s ophthalmologist wanted to examine my eyes after my daughter’s appointment.He saw something and sent me to a neurologist. Then the MRI. MS was diagnosed. I remember getting the call on a Friday night after the office was closed and was told it was MS. Had so many questions and no one to call to answer them. Got in touch with the MS Society and no one could help as they were gearing up for the MS Walk. I did receive some pamphlets in the mail, but there was no real support. They promised to get back to me after the Walk was over. Had to find out everything on my own. Several plaques indicating a demylentating condition. While spinal tap was inconclusive, evoked potentials did show signs of this disease. Now there is more than 60 lesions all over the brain.The radiologist stopped counting. I have many cognitive issues, unable to keep a job, emotional instability due to the MS. None of the medications haven’t helped. But everyone’s case is different. I have also developed other ‘invisible’, rare conditions that aren’t helping my situation. The dx was overlooked for almost 15 years blaming it on fatigue, overworked, anemic, depression, viruses, being a woman, etc. All the usual excuses. There is a whole lot more to my story.

Hi CW, thank you for sharing your story with us. I’m so sorry to hear that you had so much trouble receiving support and information. Please know that we are always here to share support and information. We’re also here to hear your story when you are ready and able to share it with us. In fact, we have a Stories section for just that. I look forward to hearing the rest of yours. We’re glad you’re here. -Warmly, Donna (MultipleSclerosis.net team)